Discussion in 'Fibromyalgia Main Forum' started by m1she11e, May 14, 2009.

  1. m1she11e

    m1she11e New Member

    I have a new doctor and she is really into Transfer Factors. At first I was bored with the whole idea as I thought they were a fad that came and went. Then I even saw some people believe they can ignite an auto immune attack which is the opposite of what my doctor's research has shown. I didnt expect it to become so confusing. I saw that you were using them with some success in older posts.

    Are you still using Transfer Factors and if so, how important do you think they are for you?

    Thank you so much for any input!
  2. Mikie

    Mikie Moderator

    I haven't been here for a while so I'm glad I saw your post. I believe I had great success with the TF's, but they were only part of my comprehensive treatment. There evidently was some concern by a few docs that they might not be wise for those suffering autoimmune illnesses. I don't know whether there has been any good followup on this or not. As far as I know, no one has had a problem with the TF's and autoimmune illness. If I had an autoimmune illness, I would definitely look into it more before taking the TF's.

    I had been on Doxycycline for a chronic mycoplasma infection and on Famvir for an unknown chronic viral condition. I was on the Doxy for 2 1/2 years and on the Famvir for about 1 1/2 years. I was much, much better, but still felt there was more I could do. I heard about using Heparin injections to get rid of excess fibrin in the blood which is caused by chronic infection. Pathogens hide out if the fibrin/platelet clumps in the blood. The injections evidently released a lot of pathogens into my bloodstream. It caused my immune system to immediately put the smackdown on them. I had quite an immune reaction from the injections.

    I ordered TF's which targeted both strains of HHV-6, CMV, Lyme, Chlamydia, and EBV. I had such a strong immune reaction to these that I had to open the capsules and sprinkle just a bit of the powder under my tongue. After a month, I was able to tolerate whole capsules. If memory serves (and often it doesn't :) I took the TF's every day for three months. Then, I pulsed off of them and back on for a couple of days every six weeks. Each time I did this, I would have a milder immune reaction. Immunity isn't permanent with the TF's. They are kinda like little oral vaccines which need boosting from time to time.

    When I ran out of the TF's, they were next to impossible to obtain. I understand that now they are available again. I didn't take the TF which targets mycoplasmas because it wasn't available when I started on the Doxy. I do continue to keep Doxy and an AV on hand because if I get sick, I can feel the old infections trying to reactivate. A round of the ABX and/or AV will usually drive them back into latency. Most of these infections never go away and can reactivate at any time.

    It's been several years since I took TF's. I continue to improve at a very slow pace. I am able to work part time. I don't know how much I will continue to heal. I do believe the TF's were a very important part of the healing and would not hesitate to recommend others discuss them with their docs. Unlike vaccines, TF's do not use live (or dead) pathogens to produce immunity. They use only the "transfer information" which the pathogens use to infect people. It cannot cause infection but will cause an immune response. Good luck to you and I hope this helps. Spacee has also been on TF's and you might want to post and ask her about them.

    Love, Mikie
  3. m1she11e

    m1she11e New Member

    I do appreciate such a detailed and quick response.

    I started with Famvir but I got my neuro symptoms that usually come and go came on full blown. It didnt make alot of sense but I stopped. I am still in a neuro flare about a month after stopping the Famvir.

    Im now with a new doctor who is wonderful and does all kinds of research. I do have HHV6 for sure and "maybe " Lymes. She started me on a Humic Acid product called Virasyl. I had heard of Humic Acid and wasnt too excited about it but if you get a real good source, it is supposed to be amazing. I have been on it for two weeks and did pull me out of a severe crash just enough to feel like I was among the living. Today my new lab test for HHV6 and all the other virus' etc come back. I know her plan is to add the targeted TF's. If she wasnt such a sincere, knowledgable person I probably would not be going back because I just havent seen much happening with TF's since they came out years ago. I have been researching them all week though and other than this board, there is not much info except for the hype provided by 4life.

    I will talk to my doctor about the auto immune concern and hopefully make a good decision with her help. Your information has been VERY helpful.

    Hope you are doing well!

  4. ladybugmandy

    ladybugmandy Member

    michelle...worsening neuro symptoms on valtrex could be a very good sign.
  5. m1she11e

    m1she11e New Member

    I get so confused about the neuro symptoms and what is a good sign. I wish I had a doctor who could recognize I am having this numbness and weakness and say "yep, Ive seen this before and it is a good sign." I didnt though so I was lost in a land of fear and could not find any info to support staying on the Famvir or going off. I know there is a "general worsening of all symptoms" on AV's. I just dont see alot on actual numbness, and weaknes and even in my face to the point it is a little hard to talk. (not slurring...)

    Sue, since you go to Lerner, can you tell me if you talked to others about these kind of neuro symptoms and a worsening that got better?

    I think the more I research the more confused I become!!!

    Thanks for any and all help though!

  6. spacee

    spacee Member

    I have taken the TF's that Rich Carson (owner of Prohealth) for years now. I had very, very good luck with them for a number of years. I live in a rural area and I, sadly, have not been able to try the abx, low dose heparin that Mikie has. The antivirals, Acylovir (old kind), famvir and valtrex, I had no response to.

    I did develope a high ana and antibodies to Sjogren's Syndrome (an autoimmne disease) last year. Thankfully, I read an article by a Rheumatologies at John's Hopkins. She noticed that every patient who was admitted by her to the hospital for kidney problems..was taking ECHINEACEA. Which is what I was doing. I loved the stuff for my sinuses. So, I stopped it and 6 months later I have no sign of Sjogren's in my labs.

    So, for me, I am sure it was not the TF's that did it...

    I will have to admit that I am not having a good year at all. My serotonin/norephrine levels are out of whack, my adrenals are low normal. I am pondering what type of doctor/holistic person to see to try to address this.

    [This Message was Edited on 05/15/2009]
  7. m1she11e

    m1she11e New Member

    Thanks for the replies,

    I just got back from the doctor and asked her about TF's and auto immune diseases, etc. We talked about alof of stuff about that and possible Lymes, etc. Finally she said, "you know way more than I do." She said it was up to me if I wanted to try the TF's and that was it. I asked what other suggestions she had and she mentioned beta-glucan and Serrapeptase. She acted like I was a rocket scientist that I knew all about those two things and had taken them on and off for years. Then she said "you tell me what you think we should do." She wasnt being sarcastic at all. My heart just dropped. She is really nice too and I thought she knew her stuff???

    I am getting to the point that I think I was better when I didnt have insurance and HAD to work for all of those years. I just ate healthy and couldnt afford tests or antibiotics or anti virals and just took the supplements I could afford. I am just not seeing many people getting well no matter what pathogen they are chasing or what method they are using. All the doctors seem to think something different too.

    Sorry, not to be depressing but I just dont what the answer is anymore...

    :( Michelle
    [This Message was Edited on 05/15/2009]
  8. spacee

    spacee Member

    I would give you the phone number for Chisholm lab (it is in my bio toward the bottom) but I already know what they would say. "it doesn't effect the auto immune".

    Sorry, Michelle. My doctor leaves all the calls up to me too. But not because he thinks I am smart. He just doesn't care. He doesn't even know how to access a computer.

    I am so sorry!!


  9. m1she11e

    m1she11e New Member

    Thanks for the laugh! I guess most of us have nothing better to do than research and probably DO know more than most of the docs out there. Doesnt make us smart, just desperate!

    My doc did say she would call Chisholm labs and ask them and they are actually going to be in her office over the weekend. Im sure they will tell her it wont effect auto immune. I did take half a capsule a couple of hours ago and so far I am not completely paralyzed... I am gonna just take it REAL slow!

    Thanks for the ((HUGS))

  10. Mikie

    Mikie Moderator

    He doesn't have as much time as I to research, so we put our two heads together and came up with my own treatment plan. A lot of it was based on info I got here. Except for the Methylation Protocol, there hasn't been much new in the way of treatments.

    TF's are not, as far as I know, harmful. I have always been willing to try anything which might help and won't hurt, except for Herxing or Herx-like reactions.

    Most of us who have been willing to do our own research know more about our illnesses and treatments than the average doc. This is why it is so important to have a doc willing to work with one in a team effort. A lot of what we do is cutting edge and there is a lot of trial and error involved.

    Good luck with whatever you decide to do.

    Love, Mikie